eHealth · Summer school

EHealth summer school participants are staying in touch!

About a week has gone by since the ACM SIGCHI/EIT Health summer school in Dublin and Stockholm/Uppsala ended. The eHealth summer school really gave a great learning experience and an opportunity to meet many researchers from similar fields. I miss both the full days of varying activities and the other participants, of course. But as I wrote in my latest blog post about the last day of the summer school, some of the participating Ph.D. students started a new community, which includes all participants and organizers.

The main communication channel for the new eHealth community is Slack and I’m very happy to see that there is already a lot of communication going on there, involving several participants! There are e.g. several hints about important conferences in fields related to eHealth and mHealth, reactions to a published journal and pictures from the summer school. Several of the participants, and the organizers, are also active on Twitter and interact quite a lot with each other’s tweets. Taking part in this ongoing communication among the participants leads me to believe that we will stay in touch for a long time ahead.

As a matter of fact, one of the summer school participants from Italy, Leysan Nurgalieva, will come to Uppsala University and work in our HTO research group for a few months, beginning later this autumn! Christiane Grünloh (who stay in Uppsala this entire week), Åsa Cajander and I spent Monday afternoon with Leysan discussing our respective research interests and possible collaborations. I’m excited about this, but will not write more about it here, since I know that there will be another blog post about Leysan’s visit showing up on our HTO blog soon.

I ended my last blog post stating that it would probably not be the last blog post I would write related to the summer school participants, and it clearly wasn’t! Now I’m positive there will be many more.

eHealth · Summer school

EHealth summer school in Stockholm, day 5!

Sadly enough, this was the last day of the two very rewarding EIT Health/ACM SIGCHI eHealth summer school weeks in Dublin and Stockholm/Uppsala respectively. This day included project presentations (of course) as well as lectures on the importance of movement and on VR solutions for phobic treatment. You can follow these links to reach my posts about the other days in Stockholm and the one in Uppsala:

  1. Day 1 (Intro, action research,…)
  2. Day 2 (Patient accessible electronic health records,…)
  3. Day 3 (Game demoes and workshop,…)
  4. Day 4 (Soma design, sustainable development,…)

You can also find the post about the last day in Dublin (as well as links to posts about the other days in Dublin) here.

This day started off with yet another one of my former colleagues from KTH, Helena Tobiasson. She discussed the importance of movement especially in relation to work. The lecture started out with a very interesting exercise, in which pairs of participants should try to illustrate different movements we make during work or our study time. We were not allowed to talk. This exercise were enlightening in the sense that it became clear that we do very similar movements for many different tasks (quite a few involving working with the laptop on the knees or on a table in front of us). One of the core themes of the talk was that we should consider movement and (non-exercise) physical activity when designing for work, so we don’t end up e.g. sitting on a chair for several hours while working. This is a very good point and it’s related to one of the main focuses of the lecture and Helena’s research in general “movement is part of a sustainable society” (see picture above). Helena also showed some practical examples of e.g. walking meetings, which I really want to try myself. A few years ago I was one of the participants in one of her studies about activity in the office. I should e.g. use a training bike and walk on a treadmill while working on some tasks in parallel. Since then I have actually began working from a training bike every now and then when I work from my home!  🙂

The other lecture focused on VR solutions for phobic treatment. Johan Lundin, Joakim Blendulf and Hedda Nyman from Stockholm county council as well as my former KTH colleague (there have been a lot of those popping up during this week’s activities 🙂 ) Anders Lundström were the speakers. These were a part of a multi-disciplinary group which involved both psychologists, film makers and engineers. The speakers from Stockholm county council presented a pilot study in which they set out to investigate if VR can be as effective as standard cognitive behavioural therapi for treating agoraphobia. They prepared films (360 degrees) of several threatening situations involving large crowded places and let patients experience the scenes through VR glasses. A very interesting application of VR, which we also got the opportunity to test! I hope they will get promising results! The second part of the lecture, which was more of an exercise, was led by Anders Lundström. It was an ideation exercise where we should use PLEX cards to discuss gamification components in relation to our projects. 

The rest of the time this day was devoted to the projects which we started with yesterday. Today, we started off by finalizing the storyboard for our chosen solutions, whereafter we spent a few hours constructing paper prototypes. Towards the end of the prototyping session the ideas were evaluated by a person from another project group. The results from the evaluation should be used to make final adjustments. Our last project task was, of course to present our ideas with the help of our prototypes. All students had really done a great job with the projects and the presentations!

The organizers really did a great job as well with putting together interesting programs for lectures, project work and all sorts of activities in Dublin, Stockholm and Uppsala! After the presentations I was happy to find out that some of the students actually had initiated a new research community (on Slack) to which all participants were invited! There, we can share moments, information about interesting conferences and papers, etc. So, even though the summer school is officially over, I have a strong feeling this will not be the last blog post I write about activities involving summer school participants outside Uppsala University…

design · eHealth · Summer school

EHealth summer school in Stockholm, day 4!

This day of the eHealth summer school contained two lectures and several hours of project work – this was the most project focused day so far. Once again it was a very rewarding day. 

Kristina Höök, an interaction design professor from the department Media Technology and Interaction design where I worked earlier, started off the day by talking about soma design. In the picture above you can see her “Soma design manifesto” which will be discussed in her upcoming book on interaction design. Her talk was very inspiring and focused a lot on movement and how we can design with movement in mind. Several examples of design koncepts based on movement were brought up to discussion and fact is that I have tried some of them at KTH during an open house session a few years ago. One example was a design solution with a lamp which light intensity varied with your breathing – it really made it possible to experience breathing in a different way. Another example was a device you laid down, which generated heat based on pressure. The common theme of all examples was that the developed products give an awareness of the body and how it moves. The lecture also contained a practical exercise in which we should sit down relaxed and focus on the state of different body parts as well as the relation between them. This was a very interesting experience especially when it came to thinking about what mechanisms we use when we start and stop breathing. We can do this in soo many ways, but we hardly ever think about it. It became clear that we are different. Most of us are not really symmetrical, especially not if we experience some kind of pain, and we should design with this in mind. After this lecture I’m really curious about that book!  🙂

The other lecture was held by Elina Eriksson, who is also a former colleague, and from the same department as Kristina. Elina focused on ICT and sustainability and her talk was also very engaging. She started out with a very important and serious subject: what is the state of our planet and where are we going (my own interpretation, not a quote)? We definitely have a problem today – the emissions (especially carbon dioxide) are increasing which in turn causes all sorts of highly problematic chain reactions. We also have a problem with resources – e.g. just recently we passed the world overshoot day and it’s not even autumn yet! This is an important topic to really think hard about, but I will not delve deeper into it here. In the other part of her talk she focused more on sustainable development and gave several intereresting examples. It was especially pointed out that the whole life cycle is of importance – not just the usage of a product. We need to consider how and with which resources products are manufactured. The issues in the production or in waste handling might cost much more, in terms of effect on environment, than the actual usage. This is of course problematic when it comes to computers and phones which are often thrown out way before they actually stop functioning (sometimes due to incompatible new software). The lecture also contained group discussions about e.g. development goals which we were adressing and goals that were conflicting. Those who are interested in this topic (should be everyone!) may also be interested in this earlier blog post about a recent talk by Ulf Danielsson (professor from Uppsala University) about the fragile system we are all part of. 

The rest of the day was devoted to project work, which started today. I will just mention the main steps here. We started with defining clear goals, after which we formulated important questions to answer. We also discussed what is needed for success as well as pitfalls that could lead to failure. The next step was a mapping activity, where we defined all stakeholders, data gathering and other key steps in the design cycle.  The next main task was to choose a small part of the idea mapped out and generate several design ideas based on it (everyone in the project group produced 8 examples under time pressure). Each person than expanded on one of the ideas which was than shown to the entire group. The group than decided what parts from everyone’s solutions that should be a part of the final group design. The last project task today was that we started on a story board. 

The day ended with a nice dinner with the entire group of participants and organizers. 

eHealth · games · Summer school

EHealth summer school in Stockholm, day 3!

As I wrote in earlier blog posts we will spend four days in this week at KTH, Stockholm. We spend those days in the visualization studio. Most of the time we spend at KTH the room will be used to attend lectures and do group work, but this particular day was quite different. Today, we got to try out all sorts of demoes and equipment in the studio as well as 3D-modelling and game development! At the end there was also a short lecture, by interaction designer and professor Jonas Löwgren from Linköping University. He talked about research through design and that e.g. physical artefacts can add something which cannot really be mediated through text and still images. 

The first part of the day was devoted to the demoes, which we tried out after a short walkthrough by Björn Thuresson who is the manager of the studio. I will present some of the games briefly below, without going into technical details. 

In the image above you can see a VR racing car game which is unusual in the way that it requires collaboration. The entire track, as well as a moving indicator showing the car’s position, can be seen on the table top screen. While the program is running, the person sitting in the chair with VR glasses and a steering wheel drives the car while at least one other person gives directions and makes sure that the holes in the track are filled with the square puzzle pieces! 

In the image above you can see another collaborative game. In this game you are controlling a little penguin and the task is to walk around and collect objects in the virtual world. In the world there are lakes (which you can drown in), fields and mountains. The main problem is that most of the objects cannot be reached unless you collaborate with someone who works in the sand box! There is a direct mapping between the topography in the sandbox and the one in the virtual world. If an object is too high up the one controlling the sand box need to start working in order to build up a mountain under the object.  

My last example above shows my colleague from Uppsala University, Ida Löscher, trying to move around in a virtual world (seen on the big screen) collecting objects. The big problem here is that another person can place barriers (in the form of pillars) in the virtual world with the help of a mobile interface, where both the world and player moving around in the world are shown! Once again a multi-user interface, but this time it’s more like a competition. 

These are just a few examples of the many things we got to try out. I really liked the collaborative aspect of the games and I think many interesting research ideas can be born here. All of the games were the result of student projects and I know that some of them have been awarded prices. 

The next part was focused on 3D modelling. Robin Palmberg, a research engineer working in the studio,  introduced the concept whereafter he guided us through a tutorial where we tried out creating a small robot like character in Blender. At the end we could export the code for 3D-printing. The printed robots will be handed out on Friday! I actually understand Blender much better now. 

The last part of the day focused on game development in Unity! We were devided into five different groups in which we focused on different parts of a game. The different parts were:

  1. Physics
  2. Texture and light
  3. Sound
  4. Mechanics
  5. AI

Every group was guided by an expert KTH student! This was a very interesting experience and I really enjoyed seeing the end result which was a combination of the different groups’ work. It was a very hard game, where you should jump between different plarforms but the important thing is that the collaborative effort worked!

DOME · eHealth · Medical Records Online · Summer school

EHealth summer school in Uppsala, day 2!

The second day of this week’s summer school was spent at Uppsala University in Gustavianum – one of the University’s oldest buildings. This was a lecture intense day, with many interesting areas covered and apart from researchers from Uppsala Univeristy, there was also a physician, an IT-strategist and a manager among the speakers!

The first half of this day was focused on patient accessible electronic health records. Benny Eklund, IT strategist at Uppsala county council, started out by discussing some of the highlights from the winding journey towards establishing patient accessible electronic health records in Sweden. Among other things he mentioned important enablers, barriers and success factors. He also brought up the contrast between the medical professionals’ fears and the patients’ overall positive response towards the possibilities that the system can give. Benny also demoed Journalen. 

The next two talks, about the professionals’ perspective and the patients’ perspective, were related to the contrast that Benny brought up. Christiane Grünloh (see picture above) and Åsa Cajander brought up the professionals’ perspective and I presented the patients’ perspective in the form of results from the national patient survey I have been writing about before on this blog. Common issues raised by doctors were e.g. that they see the record as their work tool (primarily for communication among medical professionals, not with patients), that the workflow can be disrupted (patients see results before they do), and that workload increases (more calls, etc.). When it comes to patients the results are a lot more positive regarding attitudes and possibilities. I will write more about results from the survey when those results are published. 

After lunch Birgitta Wallgren, who has had different manager positions at Uppsala University Hospital for years, talked about work with a new surgical planning system. She made several important points and I will only bring up a few here. One of the main points was that you need to know as well as respect the organization structure if you want to make a change, conduct studies, etc. If you just pick someone in the middle of the organization it will not work – you need to locate the right manager. In this case she managed to gather 19 medical professionals at various levels one day a week during 4 months! That is quite impressive! Another point related to the workflow. She emphasised several times that it is of utmost importance to take the workflow into account when designing new systems – this was the first thing they did when they started to work towards the new surgical planning system the talk focused on (they also mapped out the work process they wanted to have – this is not necessarily the same as the current one). Based on the results they started designing a system which was adapted to the target workflow. The 19 medical professionals mentioned above made sure that the team was on the right track. 

The last speaker was Gunnar Enlund, chief physician at Uppsala University Hospital. He discussed practical consequences of IT-systems in an operating theater. One of his first pictures showed (a simplified) chart with available IT-systems and how they depended on each other. That chart was very complex! He also campared the situation long ago (one doctor for each patient) to the situation today (often over 100 medical professionals per patient). This highlights the importance of 1) designing for working teams and 2) designing systems that are usable for different teams in different parts of the care process. He also brought up several examples of how IT-systems can cause stress. One key problem, which was in focus during the end of the talk was that of integration. Quite often the same information needs to be registered in two different systems, since values entered in one system are not automatically copied! This certainly doesn’t save time! They have been working on this issue for quite some time, but they currently don’t have a working solution for the integration problem. 

Before I end this post I also want to mention today’s lunch break which included a guided tour between some of the important buildings close to Gustavianum (like the cathedral and University library) and Gustavianum itself! Unfortunately I could not take an active part in the guiding activity, but my colleagues from Uppsala University presented one builing and two famous Swedes each. It was a very nice and well organized activity!

Action research · eHealth · Summer school

EHealth summer school in Stockholm, day 1!

So, finally it’s here – the first day of the second week of the EIT Health/ACM SIGCHI summer school! This time in Stockholm. Great to meet everyone again! As I wrote in my last blog post about the summer school, we got a few things to prepare in advance (a made up citation of our own work and slides to a Pecha Kucha). Before lunch most of the participants presented their slides (6 slides each, 20 seconds per slide, 20 seconds to switch speaker). Unfortunately, mine could not be included, since I had a computer break down and couldn’t reach the file. Everyone who presented today did a good job and it was very interesting to hear a few things about the others and their research interests. I will try to present my own tomorrow. 

The Pecha Kucha was not the only networking activity this morning. There was also a “speed dating” session, led by Åsa Cajander, where we should discuss a few different topics with other participants (preferably participants we hadn’t talked to a lot or worked with before). Everyone paired up for the first topic, then we formed new pairs for the second one and so on. This was a very good exercise and I remember that we did something very similar at the last DOME consortium meeting in Skövde. 

When it comes to the theoretical part, concentrated to the afternoon and focused mostly on action research, the speakers themselves definitely deserve their own paragraph here. Those in charge of the more theoretical parts were Bengt Sandblad, Jan Gulliksen and Åsa Cajander. Bengt started to work within the areas of HCI and medical informatics about 45 years ago. Jan Gulliksen was his Ph.D. student. Later on Åsa Cajander became Jan’s Ph.D. student. Three generations of HCI research using action research methodology (see blog image above)! Perfectly organized! As I have written earlier Åsa is the supervisor of students among the participants, so there were actually four generations present!

Bengt talked about some of the highlights from his 45 years in the field. It was especially interesting to hear about some of the earliest examples of incorporating computers in healthcare. We have definitely come a long way since the time when each hospital had one (expensive) computer which was often operated by specially trained technicians! But there are still problems with today’s electronic health records. Bengt highlighted that these systems have much more potential than is being used today and that there are too many problems. One interesting result related to this was that a study showed that doctors loose about 56 minutes/day due to bad usability! The lecture also brought up specific examples of success factors as well as pitalls related to the area of medical informatics research. Jan Gulliksen focused more on action research theory and the method as such. Among other things he discussed different problems as well as advantages with the method. The method is obviously heavily debated. 

The discussion around problems and possibilities formed the basis for an exercise led by Åsa Cajander. We were first divided into four groups in which we should prepare arguments supporting one of four viewpoints on action research. The two extremes were that action research is nonsense and that action research is the future of all kinds of research, respectively. The other two were in between these. After a few minutes we then formed new groups including one participant from each of the viewpoint groups. In these groups the members should try to convince each other of their own viewpoint. It was a very interesting exercise which really highlighted the ongoing debate about the method. 

DOME · eHealth · Medical Records Online

About research on patient accessible electronic health records


Last week I wrote a blog post about the second part of the eHealth summer school in Stockholm August 21-25. The second day, spent in Uppsala, will focus a lot on patient accessible electronic health records (PAEHRs) and this is one of the reasons why I will link to some of my key posts on the topic here. Most of the information here is closely linked to the DOME consortium, gathering researchers, focusing on different aspects of PAEHRs, from several Swedish universities. At the end I will also reference some important PAEHR initiatives in other countries.


General information about research on PAEHRs in Sweden

In the blog post Seminar about the history of patient accessible electronic health records in Sweden, some of the early history and background to the Swedish PAEHR system in use today, Journalen, is presented. Among other things, I describe the role Uppsala University has played. The post includes a link to a youtube video, where we see Benny Eklund, one of the main drivers behind the PAEHR implementation in Sweden, present some of the barriers and enablers from the early years.

In the blog post A very successful session about patient accessible electronic health records at Vitalis 2017!, you can find a summary of a presentation organized by the DOME consortium at Vitalis in spring 2017. The presentation gives an overview of the current state of the PAEHR system in Sweden as well as some of the latest research.

In the blog post Interviewed on a podcast!, there is a link to a podcast, administered by Södertörn University, where Åsa Cajander and I discuss some of the research conducted within the DOME consortium as well as some future studies. The interview is in Swedish.

Two times a year the DOME researchers gather at one of the universities represented within the consortium. At these meetings, or DOME conferences, we discuss both research and the consortium as such. The posts A week filled with eHealth-related activities! and Some thoughts about the last DOME consortium meeting in Skövde summarize two of these meetings.


About ongoing studies

For the moment, I lead two studies on the effects of PAEHRs. One of them focuses on doctors and nurses and how their work environment is affected by patients being able to access their own medical records online. Another focus in this study is on how the communication between care professionals and patients has been affected. This observation/interview/survey study, as well as the team behind it, is introduced here: The team behind a new large study on electronic health records in Sweden.

The other study focuses on the patients and their use of and attitudes towards the Swedish PAEHR system Journalen. This large national survey study, as well as the team behind it, is presented here: The team behind a new large patient survey on electronic health records in Sweden!.


Blog posts and research from the patient’s perspective

Since I’m not only an eHealth researcher but also a patient suffering from a chronic rheumatical disease, I have also written a few reflections on the Swedish PAEHR system from the patient’s perspective. I e.g. wrote this blog post after I had been able to see test results in my PAEHR for the first time: Now I can see new test results in my online electronic health record!.

I have also acted as a patient in some conferences. One example of this was a workshop in Oslo, which focused on if electronic access to the health record really was a service for all. Apart from being one of the organizers, I also played the patient in a role play activity. You can read more about this here: Organized a workshop in Oslo!.

Up until today, I have only written one research paper from a patient’s perspective – a workshop paper where I tried to make a case for easily accessible electronic health records. You can read about that contribution, and the very interesting critical incidents workshop, here: My first workshop contribution from a patient’s perspective!   .


PAEHRs in other countries

Sweden is far from the only country where the citizens can make use of a PAEHR system. One of the most known, where patients are invited to read clinical notes, is OpenNotes in the USA. The OpenNotes movement really seems to be a success story, appreciated by both care professionals and patients. You can read more about OpenNotes here and you can also follow @myopennotes on Twitter. Another example, which also seems to be one of the success stories regarding PAEHRs, is myUHN Patient Portal in Canada. Their system is similar to the Swedish system and you can read about it here. You can also follow @myUHNPortal on Twitter.